Jillian Rose’s CP Blog

80 million stem cells received!

September 17th, 2008

HI HI HI!!!!!!

Hello everybody!

The first spinal injection is done and 80 million healing stem cells are inside her little body right now going to work!  I’ll tell you why 80 million is so good; because with a typical umbilical cord stem cell injection they receive 10 to 15 million cells.  Plus, these are bone marrow stem cells, referred to as auto-(something) (can’t remember the second part of that term right now…..but they’re better.)  The last injection she had by IV was 20 million……………so that’s already 100 million received to date…..and there’s still two injections to go.

They changed the time of the injection.  I had posted last that her scheduled time was 11 p.m. EST, but because I insisted that we take her to the 3rd floor for general anesthesia, they wanted to give more time between eating and drinking, so it was delayed for four hours.

Last night I was in the hall at just the right time and talked to another parent that is here and is very knowledgeable about the whole stem cell procedure.  I was under the impression that when they went into the spinal room here on this floor that they were asleep, totally out during the spinal procedure.  I was WAY wrong.  No, they are not out, but just woozy and sleepy.  He said that he had allowed his son to do the first spinal in that room and he woke up during the procedure and was screaming and they had to hold him still.  He said that he had heard that from other parents about that happening too.  The trauma from that could be horrendous.  Then another mother (that just got here yesterday from Romania, and it is her second trip here) told me that she overheard me speaking with the father and that she wanted to add that that is absolutely correct, that that has happened with small children.  The spinal room and the twilight is more suited for adults, not children that don’t understand what is happening in their back.  Besides, when a child feels the needle, wakes up, screams and moves around, that could jeopordize the spinal stick.  I mean, think about it, it must be very difficult to do something so precise when a child is trying desperately to get away.

So……I thanked them for their knowledge and decided without a doubt that I was not going to allow Jillian to receive the spinal under a twilight sedation.  So first thing this morning I talked to Dr. Mike and told him what I had heard from the other parents, and he said, “Okay, no problem.  I will arrange it.”  And he got out his cell phone and put in a call to the anesthesiologist and the surgery suite to schedule Jillian in.

Poor little girl was sooooooo hungry and thirsty.  She kept looking at me and smacking her lips, which is her way of saying she’s thirsty, and saying “ummm ummm ummm,” which is her way of saying she’s hungry.  I had to keep telling her “I’m sorry, baby, we can’t have anything to eat or drink right now.  It might make your tummy upset.”  That would appease her for a little bit, then she would do it all over again, thinking maybe I had forgotten or changed my mind.

Before I forget, she was such a trooper about getting the IV put in.  She knew what was coming when the nurses came in wheeling the cart and wasn’t happy about it.  She did some exaggerated whining, but she didn’t scream and cry.  It broke mine and Carole’s heart, to tell the truth.  Again, they got it on the first try.  But it wasn’t flowing very well and we were afraid that we were going to have to take it out and do another one, but the nurse was able to adjust it, and it started flowing again.  Jillian didn’t want ANYBODY, including me, to mess with her IV hand, but I promised that the bad part was over and she let them, reluctantly, finish what they had to do with it.

*This is Carole filling in while Tami’s feeding Jillie:  Jillie woke up at about 7:30, after sleeping soundly for about 2 and a half hours.  She woke up in a good mood, and hungry.  She’s eating some wheat bread with jelly, and a half an avocado.  We have to keep her from lifting her head until about 9:30.  Tami will finish the details when she has time.  She’ll have an update before you go to bed.  Have a good day, and wish us a goodnite!  Love from Jillie!  xxxxxxx

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